Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 1,200
- 试验地点
- 20
- 主要终点
- Using the ALS Toolkit for collecting and using electronic health record data for research purposes
研究概览
简要总结
The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
详细描述
The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy).
- •Receiving care at a clinical center that uses Epic as its EHR.
- •Able and willing to provide informed consent (or informed consent obtainable from a designated proxy).
排除标准
- •Inability to understand English and/or Spanish
结局指标
主要结局
Using the ALS Toolkit for collecting and using electronic health record data for research purposes
时间窗: 12 months
次要结局
未报告次要终点
研究者
Michael Benatar
Chief, Neuromuscular Division
University of Miami